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The power of knowledge: how the EURORDIS Open Academy is empowering patient advocates to challenge the status quo of rare diseases

For more than twenty-five years, EURORDIS-Rare Diseases Europe has been at the forefront of advocating for people living with a rare disease, empowering those who advocate for them, and increasing their capacity to act as leaders of the rare disease community. The EURORDIS Open Academy is a great example of this. Launched officially in 2018, The EURORDIS Open Academy programme empowers its member patient organisations and volunteers through accessible and enriched information, education and capacity building.

The Open Academy has grown to offer four training programmes, which aim to empower patients and ensure they have the confidence and knowledge needed to bring their expertise into discussions on health care, research and medicines development with policy makers, industry and scientists.

The EURORDIS Open Academy is now bigger and better than ever, with a brand new website and a wide range of online learning courses, covering topics ranging from the use of social media in patient advocacy and medicines research and development to international rare disease advocacy. These Open Academy online learning courses empower, educate, and overall enhance the voice of the rare disease community.

“Without knowledge we are nothing. That is why the Open Academy is so important for patient advocates to really make changes in their communities, in the life of patients.” – Biljana Mircheska, North Macedonia, Save Liver Association of Patients with Liver Diseases

The EURORDIS Open Academy’s e-learning courses

The Open Academy e-learning courses are the easiest way for anyone interested to learn more online on a range of topics, which in turn empowers patient advocates and organisations to further improve their advocacy and representation of the rare disease community. These courses are free, available to anyone and are all available on the new Open Academy website.

Accompanying the new website, the EURORDIS Open Academy has also launched a new course on registries, focusing on what they are, how you can work with them and how you could create one. You can also learn about international advocacy, or even undertake courses made with a focus on helping patient organisations to enhance their use of social media, for example guidance on how to build a strong online community and how you can engage with social media influencers to reach advocacy objectives.

Other free e-learning courses involve learning about research, for example the European and international research landscape, the transformation from research into therapies and the journey from genetic research to clinical diagnosis of rare diseases. Topics also include deep diving into the development of medicines, with courses on medical framework and procedures, the use of statistics in medicine research and development and ethics in medicines development.

What else does the Open Academy website have to offer?

The Open Academy alumni are effectively using the knowledge and skills that they have gained through the training in their activities as patient advocates to represent their specific rare disease communities and the rare disease community at large. Alongside the free online training available, with the Open Academy Website you can hear from Open Academy alumni and explore the real-world impact of the knowledge and understanding they have gained through completing various Open Academy trainings, and how they are putting this knowledge into practice; by successfully advocating national healthcare systems to fund rare disease treatments, co-creating research projects, driving therapeutic developments and more.

The Open Academy Schools

One of the most important features of the EURORDIS Open Academy has been their capacity-building schools: the EURORDIS Winter School and the EURORDIS Summer School. These schools take place in person and online, with the aim of equipping patient advocates with the skills to better advocate for the rare disease community, including increased research funding, medicines development, and policy change at the national and European level.

“The Open Academy training opened my mind to the whole regulatory process and helped define our advocacy strategy throughout the 17-year journey that led to the European Medicines Agency giving a positive opinion for a treatment for AKU.” – Nick Sireau, United Kingdom, AKU Society

The EURORDIS School on Medicines and Research Development was designed in order to educate and inform patient representatives and researchers on topics including medicines development, ethics in medical research, access to orphan, paediatric, and advanced therapies and health technology assessment. Since 2008, the Summer School has welcomed participants each year for one week of intensive training, pre-training webinars and eLearning, and is supported by pre-training webinars and eLearning courses.

The EURORDIS School on Scientific Innovation and Translational Research also takes the form of one-week training, focusing on scientific innovation and translational research, aimed at deepening patient representatives’ understanding of how pre-clinical research translates into real benefits for rare disease patients. Launched in 2018 and held annually in March/April, the Winter School gathers leading experts, researchers, and patient advocates from across Europe to examine the evolution and current state of gene therapy and drug repurposing technologies and empower participants to take action to foster rare disease research and research infrastructures.

In 2019 and 2020, the Open Academy also provided training opportunities for rare disease patient advocates through the EURORDIS Digital School and the EURORDIS Leadership School. The EURORDIS Digital School was the first fully online Open Academy programme, composed of a mix of webinars and e-learning courses, helping the participants to make the best use of existing digital communication tools to improve the strategic outreach and community building of their organisations, whereas the EURORDIS Leadership School was focused on building participant’s self-awareness, emotional leadership, conflict resolution and negotiation, empowering European Patient Advocacy Groups (ePAGs) advocates and other rare disease patient advocates. This promotes meaningful engagement with health care providers and other stakeholders in the rare disease community.

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